Woman thought she had a pulled muscle working out. It was a rare cancer.
Four months later, the lump was growing. Frederick went to a dermatologist and testing found more lumps in her leg. She scheduled a biopsy. On December 14, surgeons cut into her leg and removed the largest lumps. A week later, she had a diagnosis: Metastatic malignant melanoma. The disease is usually heralded by a mole on the skin, but Frederick never had one.
More tests showed the cancer wasn't just in her leg. One scan found four lesions on her lungs. Another found five lesions on her brain. The results were shocking, Frederick said.
"I never had a migraine, headache, blurry vision, never had problems breathing, never had a cough," Frederick, 50, said. "I never felt off at all."
What is metastatic malignant melanoma?
Melanoma is the deadliest form of skin cancer. Metastatic melanoma is any time of cancerous melanoma that has spread from one location to another, said Dr. Michael Postow, a medical oncologist at Memorial Sloan Kettering, who was not involved in Frederick's treatment. Metastatic malignant melanoma refers to late-stage metastatic melanoma.
"Melanoma is a kind of cancer that can spread pretty widely throughout the body," Postow said. "It's one of the cancers that frequently involves the brain, so spread from melanoma to the brain ... can be quite a common occurrence. The lung is also a common site of metastatic melanoma."
Typically, melanoma is recognized by a brown or black mole on the skin. Postow said it's unusual but not unheard of for a patient to have no mole or a "microscopic" one. He said that in addition to keeping an eye out for a new mole or an existing mole that changes color, size or texture, people should watch for lumps under the skin like the one Frederick had. Any concerns should be brought to a dermatologist, Postow said.
The five-year survival rate for patients with advanced metastatic melanoma is about 35%, according to the American Cancer Society. Postow said clinical trials show that for patients who receive certain immunotherapy treatments, that number rises to 50%. Just a decade ago, the five-year survival rate was closer to 10%, he said.
Immunotherapy was what Frederick's doctor, Cleveland Clinic medical oncologist Dr. Lucy Boyce Kennedy, recommended. The two talked over the options and decided to go with an intensive treatment that would combine gamma knife radiation and two immunotherapy drugs. Kennedy described the treatment protocol as "fairly high risk" and warned it could lead to the immune system attacking other organs. Frederick was undeterred.
"She explained what this was going to look like. And I looked at her and I said, 'I don't care what it is. If it's the most aggressive treatment, I'm willing to do whatever it is,'" Frederick said. "I just wanted to be my healthy Jen Frederick again so I can get back to a normal life."
A difficult treatment
Frederick underwent gamma knife radiotherapy on January 7. The treatment uses precise gamma rays to target cancer tumors. Frederick said that it went well, but when she started receiving the biweekly immunotherapy medications on January 17, she began feeling "bad side effects," including "flu-like symptoms, rash, nausea," and high fevers.
As she continued the treatment, the side effects expanded to include vomiting, chills and problems with her stomach and eyes. She was using the bathroom "25 plus times a day," Frederick said. She was hospitalized and spent a month in and out of the hospital. There was significant inflammation in her colon. She weighed only 95 pounds.
"They would release me. I would go home. I'd be home 24 hours, and have to go back because I would just start vomiting again. I couldn't hold any food down," Frederick said. She had to take two months off from the immunotherapy to take steroids, antibiotics and other medications to treat the side effects. After recovering, she resumed treatment.
When Frederick underwent her first PET scan since starting treatment, it showed "major, major improvement," she said. That made the months of pain, discomfort and illness worth it. A second scan several weeks later showed things were continuing to move "in the right direction," Frederick said. The immunotherapy was reduced to every three weeks, then every four weeks as she continued to improve.
"My doctor said that I'm a Stage IV miracle," Frederick said.
"Cancer does not have me"
After 18 months of treatment, Frederick has not seen any progression of her cancer and continues to improve, her care team said. Kennedy believes that she has "a really excellent chance of having really long-term survival." Clinical trial patients who received the same treatment Frederick did are still doing well 10 years after the study, according to a recent update, Kennedy said. She believes Frederick will have a similar journey.
"I only use the 10-year number because that's just as old as the drugs are. I think those patients will have responses that last beyond that, potentially indefinitely," Kennedy said.
Frederick will continue her treatment until December 2025, Kennedy said. Then, she will start undergoing regular screening scans to make sure her cancer is not returning. Frederick said that once she is done with active treatment, she wants to share her story and make sure people know the importance of early screening. She has begun mentoring other cancer patients through the Cleveland Clinic's 4th Angel program.
"I want people to know it gets harder before it's easier," Frederick said. "My saying has always been 'I may have cancer, but cancer does not have me.' And I want people to feel that way, because it isn't a death sentence."
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A positive toxicology test also shows evidence of use, but does not provide any information about the nature or extent of that use; similarly, a negative test does not rule out substance use, which is often sporadic," the National Library of Medicine states. Last fall, New Jersey Attorney General Mathew Platkin filed a civil rights lawsuit against the hospital group Virtua Health, accusing it of singling out pregnant mothers and drug testing them without their informed consent. Jennifer Khelil, executive vice president and chief clinical officer at Virtua Health, told "CBS Sunday Morning" that New Jersey law requires hospitals and health care providers to report positive drug screen results to the state's child protection agency, which then completes its own assessment and works directly with the families on next steps. "The devastating toll of the opioid epidemic requires thorough and equitable processes for identifying and supporting babies with neonatal opioid withdrawal syndrome and related conditions," Khelil said. Virtua Health implemented a universal urine drug testing policy — as an effort to "avoid subjectivity in testing," according to Khelil — for pregnant patients delivering at its hospitals back in 2018. In October 2024, a week after Platkin's suit was filed, the hospital group modified its universal urine testing protocol. A Virtua Health spokesperson told NJ Spotlight News at the time that it now screens pregnant patients admitted at its hospitals based on "patient indications." "I think it's wrong. When you're ruining precious moments of people's lives and uprooting things, you can't just shrug it off and say, well, sorry you fell in the cracks," Katie said. Nearly a year later, Katie is pregnant again — and the same fears are weighing on her. She spoke with her new doctor about refusing a drug screen this time, but says she was told that the hospital would report her to Alabama Department of Human Resources if she declined. "So I feel trapped. This all just happened a year ago. So it's very fresh. And I'm very wounded still from it, and terrified of it happening again," Katie said.
